National Alzheimer's Coordinating Center

Data Use Agreement

I REQUEST ACCESS TO DATA collected by the National Alzheimer's Coordinating Center (NACC). I make this request for the purpose of scientific investigation, teaching, or planning of clinical research studies. In making this request, I agree to the following terms:

I will receive access to a research limited data set and will not attempt to establish the identity of, or attempt to contact, any of the NACC subjects. Further, I will not attempt to identify specific Alzheimer's Disease Centers (ADCs), unless NACC has approved such identification as part of my project's protocol.

I understand that distributing these data to a third party is prohibited, and therefore I will not distribute these data beyond the uses outlined in this agreement. A third party is defined as anyone who is not a collaborator or co-author on the analyses defined in my proposal.

I will require anyone on my team who uses these data to comply with this Data Use Agreement.

I will respond promptly and accurately to NACC's requests for updates on the status of my analysis.

I acknowledge that my use of the NACC data will be limited to the topic that was proposed and approved, and that the data may not be reused for other projects or analyses, or redistributed to other investigators, without approval from NACC.

I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting these data, and I will report any use or disclosure of NACC data not permitted by this Agreement. The report, containing full details of the breach, will be made by email to naccmail@uw.edu within 15 days of my becoming aware of such use or disclosure.

I acknowledge that NACC data do not constitute a population-based sample but rather are best thought of as a case series.

I will review the data documentation provided by NACC and consult with NACC research scientists in order to ensure the accurate use and description of NACC data in my analysis, as well as to ensure the understanding of subtle data complexities such as missing data, loss to follow-up, and differences due to form version changes.

I understand that any data I download may change as new quality assurance measures are implemented and data records are updated.

If I publish abstracts using data from NACC, I further agree to the following:

I will acknowledge the NACC grant number, and the ADCs as the source of the data, in the abstract.